It was the day before Christmas 1996, and Betsy Billings was not the type to run to the doctor unnecessarily. She had been unusually busy since Thanksgiving, trying to get ready for Christmas, and the virus she had come down with in November seemed to have left her with a profound sense of fatigue.
For a few days she had noticed ankle swelling, which brought her to the office on Christmas Eve.
Betsy had always been a bright, cheerful woman, who seemed to take everything in stride. She spoke in a high-pitched, youthful voice at age 50, had a contagious smile that included a peculiar way of squinting, and she had the funniest way of acting out what she talked about, almost like playing charades.
Her leg edema was significant, and there was deep pitting that persisted after I removed my fingers. Her neck veins were a little distended, and her heart was enlarged on her chest x-ray. She admitted to sleeping on two pillows because of shortness of breath when lying flat, and she had put on weight.
I started her on fluid pills that day and ordered an echocardiogram. Her EKG didn’t look like she’d had a heart attack.
That day was the beginning of a long journey for Betsy, who almost to the day ten years later had to rush to Boston when her pager went off in the middle of the night because a donor heart was available.
During the ten years between her diagnosis of cardiomyopathy and her heart transplant she required more and more tinkering with her medications. She was my first patient on carvedilol, a beta-blocker specifically introduced for use in heart failure. When I was in medical school, beta-blockers were contraindicated in heart failure. When carvedilol was first introduced, patients had to be kept in the office to be monitored for dropping blood pressure after their first dose.
In the beginning of Betsy’s journey, I had to double check things with our local cardiologists, and as time went along, my backup shifted to her transplant team in Boston.
The transplant happened quicker than we had expected, because of the availability of a perfect donor match. During the next several months I didn’t see Betsy at all; I just got the reports from Boston.
When I first saw her after her surgery she was on high-dose prednisone and all kinds of immunosuppressants to prevent rejection. It was a strange experience. She was a changed woman. She was physically changed from the steroids, and she had none of her usual cheerfulness and optimism. She doubted she could ever lose the weight she had gained, and she suffered from anxiety I had never seen in her before.
The obvious explanation was the steroids; I have seen before how steroids can change a person’s psychological makeup. But in Betsy’s situation, I couldn’t help but wonder what it does to a human being to have another person’s heart beating in their chest. I don’t know that all of our personality is located in our brain, with all the talk about cellular memory and other such things we hear about today.
During Betsy’s first year of living with a new heart, and while on steroids, she struggled less successfully than before with her weight issues. She had a minor spending spree on one of the TV shopping networks, and her husband, Robbie, was sometimes perplexed by her moods. She even asked to be referred to a psychiatrist.
Last month I saw her again, and she looked great. She was on a low dose of prednisone, needed almost no heart medications, and mostly came to see me for a flu shot and some routine lab tests. She told me about her August vacation trip, when she had rented a bicycle and for the first time since she got sick gone on a bicycle picnic with her sister.
As she spoke, tears streamed down her cheeks, and her funny little squint was back. She made little body movements like charades again, and I saw the Betsy I had known before her transplant. She’s a new woman in a way, but also back to her old self.
(Addendum 2024: She lived well for several years, but ultimately passed a way from cancer, which sometimes is caused by immunosuppressive therapy.)